November 4, 2015 A Trip to Mayo

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November 5, 2015

A Trip to Mayo in Rochester

The short version of this report is that my PSA is 79, down from 110 a week ago. The doctors are happy that the number continues to decrease. In addition the blood analysis shows that all my categories are normal. This is a good sign. It indicates that my body is responding well to the chemo treatment.  I have had a lump next to my navel which has been the source of some disagreement. Several doctors think it is scar tissue from my prostatectomy in 2008; others think it is a tumor.  In order to clarify the situation, we will return to Mayo on Thursday November 12 so that they can biopsy the lump on November 13. More on that when the report comes in.

It was a long tiring, satisfactory day at Mayo. We drove down on Monday November 2, spent all of the 3rd running around the complex and came home on November 4.

On the 2nd I was checked in for the day at 8:10 am.  I had previously sent them a very complete record of my medical history and had had the various doctors involved in my cancer treatment send all their reports and all the slides and images that they had.

At  8:30 I received a shot of something that made my bones show up for the bone scan.  At 10 blood was drawn as reported above.  At 10:15 we went to an optional nutrition for cancer class.  We were the only attendees to the dietitian scrubbed her presentation and we talked about my condition and what foods I should be taking. We had already moved to the kind of diet they recommend (basically the Mediterranean diet). We wondered whether any foods could affect white blood cell count, since one of the dangers during chemo is that that count goes low and while low the danger of infection-and the inability to fight infection is lessened. The answer was no, no food affects white blood cell count. I am low in hemoglobin and calcium so we reviewed foods that would increase those counts.

At 11:30 I had the bone scan. It lasted 25 minutes. Then the doctor in attendance wanted a more detailed scan of my pelvic area. After waiting 25 minutes for the appropriate machine to be available, I had that round of images, taking about 30 more minutes.

By this time it was past 1, so we went to eat in a cafeteria.  At 2:30 we began the meeting with the doctors, two of them, a resident who was in oncology this week and an expert who has been at Mayo for 30 years.  The resident, who I thought at first was the president of the local high school senior class, went over the blood work, explaining each of the numbers.  As I said all are in the normal range except calcium and hemoglobin which are just below normal. We asked a number of questions. She answered what she could and took the others to ask the expert. One of the key things she told us was that Texotere, the drug they are using for my chemo, is the gold standard of prostate chemo treatment..

A bit later the expert came, Dr. Quevedo. The first thing he asked me was whether Riordan was Spanish.  I said it could be because a number of Irishmen had fled to Spain after the various wars that the Catholics lost to the English.

His main concern was that the tumors have appeared on my peritoneal wall. This location is highly unusual for metastatic prostate cancer. As a result, after some explaining and reviewing of images, he scheduled a biopsy of the lump near my navel.  We will return to Mayo on November 12 and have the requisite blood draw (at 8) and the biopsy at 10 on November 13.  He wants to rule out that it could be some other cancer causing the tumors on the peritoneal wall. To arrange the biopsy he called around until he found a world renowned expert would do it and then he just scheduled me in.  It was pretty amazing considering the hassle one sometimes goes through to get an appointment with a specialist.

He also addressed the lesion, or tumor, on my iliac crest, one of the hip bones.  The resident had suggested that they could radiate it, but the expert said no. It’s position on the bone made that impossible. He praised my oncologist here in Menomonie for doing a good job with my condition.  Lastly they told me that successful chemo would lengthen my life span by several years, which was certainly good news.

I have hit the highlights here.  The review was thorough. We left at 5:30 feeling very good about the day and our treatment throughout the day. We planned to drive home that night, but once we were out of the office the tension of the day caught up with us.  It was all we could do to walk to a nearby restaurant, eat, and come back. I think I was asleep at 8:30.

For those that live in the Menomonie area, here is a note on driving to Rochester. We went down on a beautiful day following Hwys 25 and 35 to Wabasha. There we took Hwy 60 to Zumbro Falls and then 63 into Rochester.  Hwy 60 is a fabulous scenic curvy road.  It was fun to drive.  That route took us two hours. Coming home we came back through Plainview and Kellogg, up to Wabasha and on to Menomonie, a route that took a little over 90 minutes.  It is more rural and less scenic but we moved right along.

Second chemo session

-Second Chemo Session

Thursday, October 29, 2015

Today I had my second chemo. I have accompanied this entry with photos that include needles inserted into me. Just so you are prepared. Two drugs, Aloxi and Pepcid, are “pushed” into me.  The saline, dexamethasone and texotere flow from bags hung on a stand at my side. This stand has wheels so I can take it to the restroom should I need that. Also the IV department provides comfy recliners for me for the two hours I sit there.

We left home about 9:45 for a 10 am appointment at Mayo Clinic Health System-Red Cedar. After a few preliminaries of registering and checking my vitals, the actual session began at 10:15.  First the needle was inserted into a vein on my left hand. I had had a bit of redness last time with the needle at my right elbow. If a problem develops, it will be easier to care for on the hand.  You can see the arrangement in the photo below.

Then in succession came a few minutes of saline solution followed by 20 mg of dexamethasone, a steroid.  The dex started into me at 10:15 and flowed until 10:30.  After an 8-minute preparation, the next drug, an anti-nausea medication, Aloxi, .25 mg, flowed in, and then 20 mg of Pepcid, another stomach calmer.  The last two drugs took 7 minutes to enter me.  At 10:43 the 150 mg of Taxotere began to flow.  At 11:58 the bag was empty. After a Lupron shot, something I receive every 4 months, we left for home about 12:10.

Every drug is scanned before it is set up to flow into me. Also, before the Texotere is hooked up to me, two people have to read the labels and confirm that it is Texotere and it is meant for me. I have a picture of the scanner below also. 

The session takes place in a normal sized consultation room. Everyone is attentive, very professional, yet willing to carry on conversations about whatever topic arises. Today we discussed Dexter cattle, an Irish breed, for a bit.  I read most of the time. My current book is Our Daily Bread, a socioeconomic history of Germany from 1500-1850. I have amassed a large amount of data on my ggg grandfather Jacob Reiser and I have decided to turn all that material into some kind of small book. Our Daily Bread is part of my research.

I type this at 1:30 pm after lunch.  I feel fine and will go for a walk of about 2 miles shortly.  I don’t know how I will feel tomorrow so I want to get the walk in today.  Last time I really felt ok except for tiredness and constipation issues.  I am not sure that those issues were caused by the chemo; they had been present for several weeks prior as I worked through the ascites problems in my abdominal cavity.

I have been thinking about an entry on my emotional state as my cancer has taken the turn that it has, but I will wait a bit before I write that. The short version is that I am blessed with a makeup that allows me to say truly that I am not worried and not afraid. But there is more to that and I would like to explain it.

The lead up to chemotherapy

My cancer after eight years became aggressive on September 18. I had a vomiting attack which I initially attributed to a virus; however I had another one on September 22. That same day I went to see my oncologist.  The PSA drawn that day indicated that Zytiga had failed. He started me on Xtandi. In addition I complained about my back hurting; he decided I should have a CT scan. That scan showed that I had an abnormal amount of  ascites fluid in my abdominal cavity. We decided to have the cavity drained which happened a few days later on October 1. They removed 5.5 liters of fluid from my cavity.  That process is pretty interesting. I was awake through all of it and talked to the doctor and the nurse. At one point near the end they actually tipped me over so all the fluid would run down toward the  tap needle. In addition the sudden increase of ascites caused the doctor to suggest I stop  Xtandi and begin chemotherapy as soon as possible which I did on October 8. I will have the therapy, which takes about 90 minutes, every three weeks.  They are not sure how many sessions I will need.

 The only side effect I am having is a constipation diarrhea problem. I believe I will have this straightened around in the next day or two. What I will say is that MiraLAX really works on constipation.

The other thing that happened is that my  doctor thinks that I have about a year to live. I have announced this to my family and friends and of course they have found that hard. I have known for some time that this day would come and I am actually more prepared for it than I thought. I do not expect, however, to sit around and wait to die. I have many curiosities and enjoyments and I intend to do them until I am physically or mentally no longer able. I will comment more on the emotional side of this in future posts.

One last thing -- I will go to Rochester clinic for a thorough examination of my case in early November. They have asked for a complete set of records including slides and images back to 2007. I think a lot of us are waiting to see the results of all the tests there. One thing I have not liked is that I have had to cancel some of the speeches that I had been asked to give. But so it goes.

Beginning Chemo

 On October 8, 2015 I begin chemotherapy for my prostate cancer. The drug being uses Taxotere apparently the usual drug to use in this situation. Since the first treatment I have not had so far any of the usual side effects such as hair loss or metallic taste but I am having ongoing problems with my lower G.I. system. I will detail of these in later blog.

A daunting rise in PSA

September 11, 2015

I found my most recent PSA checkup on Sept 8 daunting.  After I began using Zytega in early July, the PSA dropped from 350 to 89 in just 3 weeks.  Wow, was that encouraging.  On September 8 the PSA was up to 260.  It will be measured again on September 22. If it goes up, I will start a new medication and if it goes down, I will stay on Zytega.

Of course after that spectacular drop, the recent results were disappointing. I try not to let myself hope for good things, but I admit I hoped that after the spectacular beginning, the number would be even lower. 

The daunting part comes from my realization that I really am in an end of life situation.  I have always been able to avoid that awareness. Oh, I had it, and acknowledged it verbally, but never really in my gut. That happened the other day. It is not particularly scary, as I have known for years that it would happen. I just wasn’t prepared; it caught me off guard.

I just had a friend die of cancer and earlier this summer another one.  For both of them they were basically OK and lively even though what they had was, they knew, terminal. And then one day it set in and within a short time, 2-4 weeks, they had died.  I finally realized that this could happen to me at any time, beginning tomorrow.  Like I say, that caught me off guard.

I am basically not sure how to handle this. One part of me says, Carpe diem!—we have done that all summer: trip down the Mississippi, trip to Denmark, month with son and family in Seattle.  And another says, Start getting rid of stuff so life is easier for Mary after I am gone and she doesn’t have to clean out all the stuff I have collected over the years.  I think I will work on that in the upcoming weeks.

I am not sure what to say. Getting my head around this is taking a bit.  I am resolved to not crumble to cancer and its inevitable end.  I am resolved to be even-keeled and funny to the end. But still, when the realization that it could begin any day occurs, there is a hard couple of hours. 

Aricles dealing with prostate cancer

During the past few weeks,  friends have sent me two urls that lead to articles regarding prostate cancer treatment. I post them here for whomever.

1. Repurposing itraconazole as a treatment for advanced prostate cancer: a noncomparative randomized phase II trial in men with metastatic castration-... - PubMed - NCBI

http://www.ncbi.nlm.nih.gov/pubmed/23340005

2. Link between high blood levels of omega-3 fatty acids and prostate cancer - Fred Hutchinson Cancer Research Center

http://www.fredhutch.org/en/news/releases/2013/07/omega-three-fatty-acids-risk-prostate-cancer.html

Some thoughts on precision and decision

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[Note; the following piece begins with old information. My PSA did go from 14 to 50 and then it went up again to 350. At that point my oncologist switched my treatment to prednisone and Zytiga.  Three weeks after I began that treatment, my PSA declined to 89. I will not have a followup reading until the middle of September. The rest of the piece is my ruminations about this disease. To see another view of this, see my previous entry which is a letter to my nephew about the same issues.]

My PSA recently increased from 14 to 50. This increase occurred after the PSA had decreased from 22 to 14. The decrease occurred during the first two months that I was taking a twice-daily dose of dexamethasone. The increase occurred during the second two months.  I am now waiting until the end of May to discover whether continued use of dexamethasone will again reduce my PSA or whether it “fails” and I need to begin a third medication.  As I understand it if the third one also fails there is a fourth and then chemo.

After I announced this development my nephew wrote to me asking for an explanation in layman’s terms of PSA. I couldn’t supply it and after reading various websites, still can’t.

The two issues have caused me to look closely at the biology involved and my emotional state. At this point I feel imprecision and indecision.

One dimension of the imprecision is the process of PSA at work in the body.

PSA means prostate specific antigen. The prostate produces PSA (http://www.cancer.gov/cancertopics/types/prostate/psa-fact-sheet ). These two definitions are relevant. (1) An antigen “is any substance that causes your immune system to produce antibodies against it. An antigen may be a foreign substance from the environment, such as chemicals, bacteria, viruses, or pollen. An antigen may also be formed inside the body, as with bacterial toxins or tissue cells” (http://www.nlm.nih.gov/medlineplus/ency/article/002224.htm). (2) An antibody is “a protein produced by the body's immune system when it detects harmful substances, called antigens. Examples of antigens include microorganisms (bacteria, fungi, parasites, and viruses) and chemicals” (http://www.nlm.nih.gov/medlineplus/ency/article/002223.htm ).

This seems clear. Antigens are bad. Antibodies are good. But then my questions begin. Why does the prostate produce antigens? Does a part of my body produce PSA-fighting antibodies? What does a rising PSA really mean? Because I have had my prostate removed what in my body is creating PSA now? Is the rise and continued production related to tumors that have formed?

When I read various sites, I find the definitions, but not the description of the process. The sites quickly move to discussions of the PSA blood test and the effectiveness of screening. Those discussions are very clear, but they seem limited to the test and not the far-ranging biological process or the emotional reaction to the increase.

Another dimension revolves around the meaning of my original Gleason score of 9 and the fact that even in the prostatectomy the surgeon removed part of my vas deferens. At this point I have a biopsy-identified tumor in my iliac crest--a bone in my hip structure, and two other probable tumors in my abdominal cavity.

What do those facts mean for me in terms of quality of life and life expectancy?  When I read websites about them I find very technical descriptions, some anecdotal stories of maintaining ones calm, and calming stories of the “there will always be help and comfort at the end.”  None of them are useful to me.

I have found it hard to know quite how to react to my rising PSA. When it first started to go up, my urologist told me that I was “not at risk” (of dying soon) but that I could have quality of life issues. Exactly what those are, or could be, is not clear to me. After the PSA climbed above 2 the urologist said he had done all he could and that I would now need to see an oncologist, which I am currently doing. The oncologist is very focused on the PSA number and some other questions that I will discuss in a minute.  The goal is to control the number, to prevent its rise. If it rises, the oncologist switches the medication. So far I have been on two medications and expect to begin a third at the end of May.

The questions he asks have to do with discomfort. How am I feeling? Do I have pain?  I answer “no.” I feel pretty good. I work out with weights three times a week and rock climb once a week.  I have noticed no diminution of my ability to perform at either activity.  I have increased my skill level at rock climbing.  Once I answer in this manner, the discussion of discomfort ends and we are back to the numbers.  At the last appointment the oncologist told me that rising PSA might not mean as much bad as it could if it is accompanied by a stable body health.  I have both.

The indecision is the result of the issues with the health description. The basic feeling that I have to fight is What is the use? Why bother?  I find that this reaction occurs both to the prescribed course of treatment and to almost any decision relating to my future, such a planning a trip.  If it takes about 4 months to determine whether a medication is working, and if I have two more medications to go, then in eight months or around the end of January 2016 I will begin chemo. What should I plan for 2016? You see the issue? It is a tough one to negotiate.l

 I have done some reading. Prostate tumors come from prostate cancer cells that have travelled to a new location. Well, OK.  But what does an increase in PSA mean?  That there are more tumors?  That more cells are making PSA? I don’t know.

Today, though, I can talk about how the two issues—indecision and imprecision—come together.  I have blood in my urine today after none for about three weeks. It is a bit thicker than usual and it has passed on four consecutive urinations. Usually the bleeding stops after two. The first bleeding often passes a clot with blood and then the next bleeding seems to clean out the residual blood. I have seen the clot in three of the urinations. The first one happened while I was defecating; if there was one, I didn’t see it.

OK, now for the interaction. What does this bleeding indicate? Why has it started up after a three-week layoff?  Well, this week I changed my diet.  I have gone to a heavily plant based diet. We have only had meat one day this week, chicken last night. We had trout one night and two nights were vegetarian. I am eating a half avocado a day. There is some indication that avocado contains a chemical that might fight the cancer.  I also drank my first cup of green tea yesterday, a practice I expect to continue regularly.  Did the diet change cause this bleeding?  I suspect not , but I am not sure.  So, should I continue on this dietary regimen? Or is it silly, that is, having no effect, or dangerous, that is, causing the cancer to react to what is passing through the urinary and colonic tracks?

Today, too, I have a dull ache in my lower right groin.  I have had it before. I comes and goes. My primary doctor thought it was related to the rock climbing I do. I often stretch out into extreme angles at my hips. He thought it was some kind of sports hernia.  On the other hand the CT scan I had last year indicated that there is a mass in my rectal area and my urologist confirmed that it is there—he could feel it. But he wasn’t sure it was a tumor.

So what should I do? How do I react to this mild pain?  The best is to just ignore it. Figure old bodies get pain. It goes away. But when I let in and im kick in, then I can wonder if the pain is a symptom.  I don’t like the kind of worry. I don’t have the answer to the questions. I don’t like leaving what could be potentially dangerous (at least so I think, but I have no idea) alone.  Should I do something about that? Talk to someone? I tell Mary, and the doctor when I see him, but that is all.  I hope what I do is right.

I can give another example related to the bleeding. Often a bleeding episode occurs when I have a pressure on my anus. It feels like I need to sit down to take a bm. (I have decided to quit using words like crap or shit. Less aggressive seems better.) Sometimes I do sit and stools, urine and blood emerge.  Sometimes I just stand at the toilet, the urine and blood emerge and the feeling of needing to defecate goes away.  Sometimes I sit and a stool drops and urine but no blood. Today I have had all three experiences. Granted the context I am putting all this in—in and im—how do/should I react to all this? Ignore it? Worry that the tumor is getting bigger? I find this area tedious and it is one of the things I mean when I say that a person has to fight cancer often in not very obvious ways.

The other thing that has happened is that the PSA jumped. Mary and I had several end-of-life discussions. Then things settle down and I jump back from that boundary and deal again with the ordinary vicissitudes of this disease and daily life.  When really do I need to do end-of-life thinking?  Perhaps always or regularly but as often as I visit the oncologist, every couple of months? Or about the same as anyone else who is past 70 and does not know whether the proverbial bus will run you over today.